Thursday, May 13, 2010

Day 36 Update

Today was fun. Today was busy. Busy was why this post is so late. Fun is why I'm doing this post. Scott was fun today. I was able to bring the boys in with me while we visited for quite a while. I hadn't talked with Scott for this long since before surgery. He was awake for over 2 hours while I was there and it was so nice to have a light mood, despite all that was going on. He would laugh, he would grin, he would smile, and the best part....he was really messing with me. He was messing with my head by messing with his head. Seriously. It was awful. He'd reach up and rub his 'brain'. Every time he did that, I would get chills and goosebumps all over. I'd shout, 'stop that!'. And he'd just grin at me and say, 'you know, if I push hard enough, I just pass out.'. Gross! He would reach up there, over and over, and just smile because it freaked me out. It really reminds me of the typical sibling thing where one kid does something just to hear you scream. Then your parent tells you that if you stop screaming, they'd stop torturing you. Well, sure enough, every time I'd got mad at him, he'd keep reaching up to his soft spot. So, instead of getting upset, I decided to join in. Yup. You read that right. I reached up and felt his head too. Took me a while to get the nerve but I felt the ridge above his eyebrow and was shocked. I never knew our skulls were that thick. I mean, it felt like my finger dropped about in inch. Crazy stuff.

So, after today and that experience, I'm definitely ready for the flap to go back in. Then he'll have to find yet another way to bug me. Love ya Boog!

~Betsy

Bone Flap, Diane

I saw a comment about what is the bone flap. Dr. Schubert, a Neuro Fellow, came in and explained the procedure to Scott and me very well, so I will do my best to explain it here. Although I have learned A LOT about Scott's many 'issues', I do not claim to know what I'm talking about lol!!!

Ok to start think of the bone flap as your skull. It's pretty much the bone that protects your brain, it's right under the skin. The Doctor said that you have the skin, the bone flap, a thick protective layer (his description made me think of it like more skin) and the brain. The procedure he will have done is called a Cranial Plastic with a Proex Implant instead of his original bone flap. This is what Dr. Newell, brain surgeon/head of neuro team at Swedish, Scott attending physician's scheduling coordinator told me. (sorry I don't look things up so no links to the info)

What is this procedure?
They will open his skin up, place the Proex Implant (prosthetic bone flap) in fitting it into the place where they removed his 'skull', secure it in place with screws (not sure what they are made out of or what they sesure it to) putting the skin back on and stitching up his skin. When it is done his hair will grow back and it will look like nothing ever happened. OK so we might be able to see a scar down his hair line by his ear.
To look at him right now his head is very miss-shaped. There is a distinct ridge in the middle of his forehead and the right side of his head is noticeably different. The shape of the right side completely depends on his position and how his brain shifts with that position. At times it is very sunken in, but usually it is fairly rounded. One of the hardest things about this is you can tell that his brain is right there under the skin! One super huge soft spot!

Why do I say procedure instead of surgery?
This is what the Neuro surgeons say...YAY. We like procedures. This is a procedure,because they are only going in to replace something. They will not even be messing with the BRAIN.
Dr. Schubert said it's really only a cosmetic thing, well and a protection thing. In Scott's case it's a little more. Very few people who have a craniotomy, part of there skull removed, experience what Scott has with having to stay in bed, hence the amount of time it took to get it here. It was ordered by someone who did not realize we were still in the hospital, usually they are like 3-4 months before going back in. I know, I know how did that get missed? Basically there are lot of hands in the pot where Scott's case in concerned.
Another huge difference is this is planned, controlled. They know what needs to be done and they know what to expect...Scott's case has not been text book. I pretty sure they are planning for worst case even with this procedure just to be safe. But that's the difference they can PLAN. Oh and that when it comes to neuro surgeries this is the easiest thing they do!

His surgery on April 9th was the exact opposite. It was not planned; it was not controlled; they had no idea what to expect when they opened his head. They had to open all the layers of the head to get to the brain and then they had to go into the brain to remove blood! This is one of, if not the Hardest thing Neuro Surgeons do.

Sorry you all got to deal with my long winded rant. I sure hope it make sense though. Let's hope his head gets put back together early next week and we can move on to rehab soon!
Diane

Tuesday, May 11, 2010

Day 34 Update

As I've said before, I'm going to post when there's something new to post and today, there is definitely something new to post!

Scott sat all the way up in bed today. He was able to put his legs over the side of the bed, swing his legs back and forth, and reach his arms out. This is a major accomplishment since he hasn't done this in 4 1/2 weeks. Imagine not using those muscles for that long. We were told from the beginning that his left side was going to be affected more than the right. After seeing him on Sunday, it's hard to tell if there is a strength difference between the two sides. I'll tell you now that the first 2 weeks after surgery, he was barely moving his left side, if at all. They'd ask him to give a thumbs up and he would sometimes twitch his left side. We were all worried. But, once again, Scott has proved our worries wrong and is doing so well!

His prosthetic flap should be here very soon and they are planning on putting it in the beginning of next week. I'll have a lot more to post (probably twice a day again) for the first little while afterwards.

~Betsy

Sunday, May 9, 2010

Happy Birthday!!!!

Today is Scott's 33 birthday!!! Wow, man, you're old! Ha Ha!! As some of you know, I tend to like numbers, so I've figured some things out here.


Booger's favorite number is 3. He got married on the 3rd and Diane's birthday is on the 3rd. It's part of his email address. It was the number on both our race cars, two cars....two 3's. It's part of his email address. And I'm going to have to ask him if he does things in threes, kind of like how I have to do things in even numbers (I guess everyone knows about that weirdness now). And I know this is a stretch, but tomorrow marks his 33rd day at Swedish.

Mom just mentioned we need to make it our goal to have him back in Wenatchee by the 3rd of June. I think that's a GREAT idea!!!

Booger, we're so happy we get to celebrate this 33rd birthday. I know it's in the hospital and it's not our ideal way of celebrating. We're just all so happy we get to celebrate this day with you. Celebrate your life and how fortunate we all are to have you a part of ours. I hope you have an absolutely wonderful day!!

~Betsy